Friday, July 4, 2008

Sarah has a new brother!

Little brother David Asa

Susan delivered the baby at ~9:00am this morning. He (boy) was 7.6 lbs, 22-1/2" long. His name is David Asa. He is healthy and very alert. Susan is doing great and the delivery was pretty much the same as the previous eight, fairly smooth. Actually, Susan's midwife came to our house yesterday to help induce an early delivery. Whatever Susan and Cindy did apparently worked pretty good.
We are relieved and very grateful that the baby came before Sarah was admitted to Dana-Farber. We now have ~two weeks to focus on preparing for BMT admission.
Sarah's leukemia is still in remission, but the doctors are watching her closely. We need her to stay in remission and not get sick to be able to move into the BMT. If she slips out of remission, then we will likely have to go through more blocks of chemotherapy and shoot for the BMT again. We do not want that to happen particularly due to the additional intrathecal chemotherapy that would be involved. The intrathecal chemo can cause neurologic and cognitive side effects. We worry about a lot of things lately, but the intrathecal treatments are high on our list.

However, today was a very good day. We were all together, we have another person to love in our family and our load is a little lighter now. Our day was filled with joy and we find ourselves blessed again.

Sarah walking at the hospital last Friday before they released us to go home later that evening.

Thursday, July 3, 2008

Support Calendar

Someone we know suggested we add a calendar to our blog so folks could know the areas we could use a hand with. Many folks have also offered to provide support over the last 2 months. So, the other day I added a calendar at the bottom of the blog.

The calendar shows some of the support that would help our family (other than prayer). I do not want to downplay or minimize any of the other types of support we have been receiving (email, phone calls, gifts and so on), so please continue to provide support as you can or see fit.

There are also things people are doing, might be doing or have offered to do for us that are not shown on the calendar. In addition, things may show up and disappear from the calendar fairly erratically as we learn more about Sarah's needs and treatment. I guess I'd ask you to be flexible with us as we work through what's happening in our family.

Send an email to me (Ben) or Susan using the link below if your heart is moved towards providing some support (or for any other reason). If you have support you can provide that is not shown on the calendar, feel free to suggest it. I may not necessarily take you up on it, but I will always be grateful for your kindness and outreach.

Not much of an update to give on Sarah today. She had a red blood cell transfusion at the hospital yesterday and a hearing test. Both went well and her hearing is normal. Sarah will have a full day of testing at the hospital next Wednesday that I'll describe on the next posting. Susan is going to be working with her midwife this weekend to see if an early delivery can be induced. It would be good if the baby came sometime before Sarah is admitted to Dana-Farber on the 18th.

Tuesday, July 1, 2008

BMT is Scheduled

Sarah's PICC line did not need to be removed. Thanks for all your prayers on this. We were so relieved that it could stay and be her means of access for blood work since there is no pain involved. The PICC line will need to be replaced soon with a Broviac central line. The Broviac is a longer term replacement for the PICC. The Broviac replacement is scheduled for Monday, 7/14. Sarah will be anesthetized for the replacement.

We made it to the meeting with the folks at Dana Farber today. It was a long day and filled with lots of questions and answers. Johnny, Betsy and Sarah all had blood drawn today for testing to choose which of the two will be the donor. Sarah is scheduled to be admitted on Friday, 7/18. We learned about what to expect during and after the BMT.

Some key learning's from today's visit:
1. Sarah will be in the hospital for 4-6 weeks and visiting 2-3 times a week after release.
2. Sarah will be vomiting a lot (up to 3 weeks) after radiation ends and be treated for pain (mostly from mouth sores) with morphine.
3. Sarah will be allowed up to 3 healthy visitors in her room at any given time throughout her stay.
4. Sarah will not likely have any cognitive impairment from the radiation, but will likely be infertile.
5. After Sarah returns from transplant, she can not be in public places (restaurants, libraries, stores, church, etc.), but she can go outside (yard, hiking, etc.) for 6 - 9 months.
6. After Sarah returns from transplant, only immediate family members are allowed to be inside the home for 6 - 9 months.
7. The doctor said Sarah's biggest post transplant risks were from other people and poop. There are other things we should be careful about, but these are the biggest.

I will not list the multitude of other things discussed or the update would never end today.

It is difficult to take all this "one day at a time" and Susan and I are challenged to keep our stress in check. Please pray that Sarah will continue to respond well to her different treatment types and overcome her cancer.
-Psalm 119:74-76